CAH Support Group Australia - Symposium 2009 Melbourne VIC

For those who were able to attend this year, thank you for making the Symposium such a success. We were very grateful for the support from Monash Medical Centre in hosting this year’s Symposium.

As usual we had a good number of interstate members attend with a range of young families with newborn babies through to adults. We are still fine tuning the focus groups so this year we allocated more time and split the groups into smaller sizes. The groups worked very well and there was a lot more opportunity to discuss issues and ask questions.

The focus group for families with boys was a worthwhile session. There was a good mix of families with young boys and families with adult sons. It was great for the younger families to ask about future issues with the older families. Some of the discussions were around situations like school camps, puberty and compliance. Overall it was a very positive session and the older families were able to put a lot of concerns to rest and reassure younger families. Most situations take care of themselves and their sons haven’t had too many disruptions due to CAH.

There were two focus groups for families with girls. This has been a large focus group in past years so we were grateful to be able to find extra facilitators to create two smaller groups. One of the great opportunities for the groups was being able to ask teenage girls who were attending, questions about how they cope living with CAH etc. It was also helpful holding the focus group straight after the adolescent gynaecology session.

We also had a small group of adults who were able to catch up and share information with each other during the adult focus group. This is a great opportunity to share resources and find local medical support etc.

In addition to the feedback over the years to create a bigger session for focus groups we have also received feedback for more personal stories during the Symposium. We were very appreciative that one of our members shared their difficult story about their daughter’s diagnosis and the experiences surrounding that time.

The presentation by Dr Phil Bergman was excellent. His presentation was easy to understand and covered a lot of ground in understanding CAH. Various topics were covered such as adrenal crisis’, newborn screening, growth concerns, fertility and the effects of androgens etc.

Some highlights were the detailed education on bone age and growth plates and with the visual aid of x-rays it was easy to see and understand, also explaining the circadian rhythm method of dosing where they try to avoid peeks and troughs and replicate natural levels over a 24-hour period.

It was great to see so many people taking the opportunity to ask Dr Bergman questions throughout the presentation. Just listening to the questions and then general discussions throughout the day reinforced the information given.

Dr Sonia Grover spoke about the aims of surgery. Generally the aim of surgery is to allow normal function of female genitalia and to ‘normalise’ appearance. She covered the arguments against surgery and the arguments pro surgery.

Another topic covered was the role of adolescent gynaecologists and where they fit in with the holistic management of CAH. Most states now have an adolescent gynaecologist who can consult with girls during adolescence and can assist with any gynaecological issues that may occur through adolescence and adulthood.

Apart from the valuable information presented by Dr Grover, her direct and approachable nature was very well received and made somewhat difficult and uncomfortable topics much easier to discuss and understand.

During Prof Fuller’s presentation, he talked about the transition of children receiving care through a paediatric endocrinologist to seeing an adult endocrinologist. During this time young adults have to see their condition as their own and not their parents’.

Prof Fuller had some fascinating case studies that he talked through with us about CAH management in adults and he also covered the all important issue of testicular tumours in adult males.

Irene Mitchelhill’s presentation and hands-on session was fantastic. We can’t thank her enough for the support and enormous amount of work that she puts into these sessions. Irene covered the practical aspects of CAH care during an illness reinforcing procedures for illness and adrenal crisis’.

The injection session was great. Everyone had the opportunity to practice injecting Solu-Cortef. These sessions have highlighted the importance of holding practical lessons at the Symposium as some fathers at the Symposium had never learnt to do an injection. We realised that due to work limitations often one parent will attend appointments and education which can leave the other parent less prepared.